Episode 60 : Laporascopic Hysterecomy After-Pain and Poor Patient Education

Those of you who know me know that I (unfortunately) spend most of my time on The Mary Dell Show discussing my various chronic illnesses (neurogenerative disease, liver disease, heart disease, ad nauseum). Today, however, I want to discuss a slightly more acute situation--surgery.

Last Thursday I had a laporascopic hysterectomy during which my uterus was yanked out through my vagina.

"Laporascopic" surgery is a less invasive surgery than the old cut-'em-up hysterectomies. My doctor explained that I'd have two small incisions in my abdomen through which the ovaries would be removed, and the rest of the kit and caboodle would be, as I said, yanked out from below.

"Do you have any questions?" Dr. V asked.

I didn't have any questions. I'm a medical librarian, and in my hubris I thought, "I've got this."

I'd already done the de rigeur quick overview on the procedure on one of my trusted sites for overall medical information written for the patient (listed at the end of this article). I'd heard a lot about laporascopic surgery while working at a non-profit health education agency over the years, and I never heard much or anything about post-surgical pain.

Here, now, is a real-life example of how reading or hearing about something does not necessarily prepare one for an experience like this.

I'd figured with the minimal cutting involved, this hysterectomy wouldn't be nuthin'.

I was wrong.

Don't get me wrong; I've no doubt this new, less invasive surgery is light years better than the old way.

But it ain't nuthin'.

Neither the doctor nor several nurses I saw told me about a couple of possible issues that might follow the surgery. On Day Two, my shoulder started to hurt like a muv, as my brother used to say when we were kids. Later that day, my rib cage was so tender it hurt to breathe. The pain was worse on my right side, and I wasn't sure whether it might also concern my liver, since I do have chronic liver disease.

Okay, then, back to the Web--a quick and dirty Google search: "laporascopic hysterectomy rib pain."

Bam.

Common side effect of abdominal laporascopic surgery, I'd learn. What the doctor didn't mention, and I hadn't picked up on in my reading, is that the body is pumped full of carbon dioxide (CO2) after the patient is put under. This gives the surgeon more room to get to the target organs without nicking anything else in the process, since the CO2 blows up the abdomen something like a balloon and spreads the innards apart.

Apparently, some post-surgical procedures are done to suck as much of the CO2 out of you as possible, but they don't get it all. And it sits there in your abdomen and starts making your body hurt in fairly predictable ways.

I actually did track down patient information from one clinic that mentions the potential for chest, shoulder, and abdominal pain after a laporascopic hysterectomy.

I wonder why, in my case, neither the doctor nor the nurses mentioned this possibility. What if I hadn't felt comfortable doing a quick Google search to find out why it was happening? Couldn't that pain and difficulty breathing been frightening for someone with heart disease? I mean, I have heart disease (cardiomyopathy), but mine is very mild. Still, it's disconcerting when one can't breathe.

Perhaps the health care professionals, in all their wisdom, don't want to put ideas in a patient's head, thinking that if they don't know it's a possibility they won't feel it. Well, that's bogus. I didn't know, and I definitely felt it.

It just amazes me at this point in health care that something so frequent that it's nearly to expected is not mentioned in the patient education done before a routine but serious surgical procedure.

Other than that, I can't really complain about the care I got, though I hesitated to go to the hospital in the small Appalachian city near my home. A friend had recently had a botched surgery to fix a hernia there, and other patient stories abound about the place's quality, or lack thereof.

In the end, though, I opted to stay local. In my next episode, I will discuss the factors leading up to that decision when you're Down the Rabbit Hole in today's health care system.

By the way, it's now Day Six after the surgery. The shoulder pain lasted only one day; the under-ribs pain ended after Day Four; and now I just have a sort of ache or cramp in my lower abdomen. The pain pills take care of that, but I don't feel like dancing a jig, I can tell you that.

I'm still amazed there isn't more patient education on the pain to expect after a laporascopic hysterectomy. This pain is acknowledged in the medical litereature (for doctors), but I haven't found anything about it in the patient education materials online.

Yet the fact that it's real can be attested to by the numerous patient forums in which this problem is discussed. This is just one more example about how the patient comes last in today's health care. Patients are left to find this information out from other patients--not necessarily the most informed source.

With all the talk about patient-centered care, this should NOT be the case, but that's the problem right there: it's all talk; "patient-centered care" means little to nothing in the actual delivery and reception of health care except in the individuals who inherently bring this orientation to their delivery of care. Many times, these individuals are nurses, but some doctors also show this trait. What's clear is that it isn't something the entire system focuses on to any real degree.

But you'd think they'd come up with complete patient care information for something as routine as a laporascopic hysterectomy.

Episode 59: "Connecting All the Parts," or Seeing the Pattern of One's Life When Facing Death

One of my heroes, Oliver Sacks, is dying.

If you haven't read any of Sacks' books, you must. Years ago, I read The Man Who Mistook His Wife for a Hat, which whetted my appetite for more knowledge of the brain and its workings, particularly as they relate to memory, consciousness, and personality.

Oliver Sacks--Photo from NPR.org

Sacks also wrote Awakenings, which was made into a film with Robin Williams playing Sacks as a young doctor treating patients with encephalitic lethargica, a disease that leaves many of its sufferers in a catatonic state. Sacks treated these patients with a drug that brought them "back to life" but tragically was not a permanent cure and the patients lapsed back into catatonia after a fairly brief period of consciousness. In the years since the book came out, Sacks has been criticized by some who say he didn't properly conduct his research on these patients, but as far as I'm concerned the man's compassion for his patients shines through in all the pieces I've read that he's written. I believe his record, as recorded in his writings, and his contributions to neurobiology need no apologies.

Encephalitic lethargica is rare, but a sudden rash of patients landed in hospitals just after World War I and the Spanish Flu epidemic, leading some scientists to believe the condition is caused by a virus. However, post-mortem examination of brains of some of its sufferers have shown no evidence of a virus--so who knows. Fortunately, researchers continue to research cases as they appear, and the more we can learn about the brain the better for those of us who have neurodegenerative disease.

As a sufferer of hypersomnolence--which some encephalitic lethargica patients have rather than sheer catatonia, I'm obviously intrigued with this condition and all others that result in a less-than fully-conscious state. My neurodegenerative disease was only recently diagnosed, and the exact type of disease has yet to be determined. White matter lesions throughout the brain, found in my brain in abundance on a recent MRI, is a sign of a number of different degenerative conditions, so the differential diagnosis (investigating the different diseases I may have and coming up with a definitive diagnosis) has not yet been conducted. In fact, little is going on in that department. It's more of a "wait and see" type thing, itself quite unnerving.

More than the encephalitic lethargica angle, which I do plan to read much more about, right now I'm more interested in Sacks' thoughts in an essay he recently published in The New York Times as he contemplates his imminent (thought hopefully not too imminent) demise ("My Own Life: Oliver Sacks on Learning He Has Terminal Cancer, The New York Times, February 19, 2015). A cancer in his eye, treated nine years ago, has all these years afterwards metastasized to his liver and is now incurable.

"Over the last few days," Sacks, who is 81, writes, "I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection of all its parts."

Though Sacks quickly goes on to say he is not yet done with life, I want to stop and think about this line for a moment. It's worth repeating. "I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection of all its parts."

I'm an avid reader and lover of libraries and bookstores. Years ago, I was in Baltimore at the University of Maryland bookstore and happened upon a book written by a social worker that intrigued me after reading the blurbs on the back. I bought the book.

This social worker had spent time with older adults, "seniors," if you will, gathering their life stories, and what had struck her was that most of them told her that, as they faced the end of their lives, they recognized their lives had had an underlying pattern, a purposeful pattern, in which things had happened for a reason, one leading to the next and the next until a sort of tapestry had been woven that represented their lives.

Though I never finished the book (a rare thing for me, but I was into so many things at the time that I somehow lost track of it), I remember sensing great relief that these folks had felt this way and that enough of them had done so that the social worker had recognized the, ahem, pattern.

I found the book not too long after losing both my parents in the space of four years while in my twenties. I'd read lots of books on death and dying by then, but this book gave a fresh perspective, one about life more that death, yet with added urgency.

I so wanted to believe life had meaning, that my parents' lives had had meaning, that my life would have meaning--that all lives have meaning. I still do. Yet, given my inner skeptic, I still remain open on the question.

Do our lives have purpose and patterns that "connect all the parts," or are we merely random examples of life, no more significant than a tsetse fly?

Oliver Sacks' saying the same essential thing that the seniors' narratives in the book had strikingly shared--this sense of meaningful patterns--is again reassuring. I can't help but face my own demise after my diagnosis of neurodegenerative disease. That this reassuring sentiment is now shared by my personal brain guru makes the idea just that more meaningful.

I think a lot about my brain these days, and I think about death a lot these days.

And so here is one of those connections Sacks suggests--a pattern, if you will, at least as it relates to one aspect of my life--my fascination with the brain. My parents' deaths, the social worker's book, and now Oliver Sacks' essay have nicely woven together. Add to that pattern another book that immensely comforted me after my parents died--Viktor Frankl's Man's Search for Meaning, written with hope and heart about his experiences in a German concentration camp--and the fact that I just this moment looked up Frankl and was reminded that he was also a neurologist--and, well, the pattern weaves on.

If I'd known what I now know about myself when I graduated from high school at the age of 16 (after skipping my junior year), I would have gone straight to college and studied neuroscience rather than taking the massive detours in life I did to arrive I'm not quite sure where. As I've said before, I share more with Amy Farrah Fowler than I care to admit--though I just did.

I have more in common with Amy Farrah Fowler
than I care to admit--though I just did!

Of course, the idea of lives as narratives is not brand new. Though I haven't been an active student since first becoming debilitated by illness in 2008, I am about halfway through the course work for my PhD in English (and thinking about trying to finish now--why not?). I've studied the concept of identity and personal narrative through that lens, a lens that does not conflict at all with my interest in neuroscience. These two seemingly disparate fields--English and neuroscience--connect (there's that word again!) in this arena. Our memories form the narrative of our lives, and memory is a key component of the scientific study of the human brain, just as narrative is key to English literature and identity studies.

Yet, as reassuring as all this is, it also lends itself to a scarier scenario, the scariest  part of neurodegenerative disease. Will I lose my narrative, my memories?

My grandmother was sharp as a tack and lived in her own apartment until she turned 86 and started calling my mom at 2 a.m. and asking her why it was so dark at 2 in the afternoon, putting the milk carton in the oven, and other wacky things. I saw her disease rob her of who she was, though she always managed a smile even when the nurses at the nursing home tranquilized the bejesus out of her, as was customary at the time.

And so, even if my demise isn't immediately imminent, I can't help but worry that I will lose my own narrative before actual death occurs, a sort of death of the personality, the person I am, or who I believe myself to be.

Does my life have a meaningful pattern? Do the good and bad things I've done or experienced all add up to a life that makes sense in some grand scheme, if only to myself? I have inklings of that sense of pattern, and that's encouraging.

It's easy for my romantic side to cling to those, but, in the dark nights while I'm wide awake and the rest of the eastern seaboard of the United States is sleeping, my inner skeptic creeps in and the idea that my accidental life on this random planet in an incomprehensible universe means nothing at all, nothing whatsoever.

And then I read something amazing by Oliver Sacks, and the darkness lightens.

No matter what the ultimate answer to this question of meaning ends up being, I have to agree with Sacks when he assesses his life in his new essay: "Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure." The privilege has been ours, Dr. Sacks. And the biggest privilege for me has been giving birth to the two best sons on the planet.


Epilogue: In a truly strange twist to this episode, I was just putting the caption on my Amy Farrah Fowler photo above when Honey walked in the room. Knowing my nuttiness for turtles, he said I needed to go to the living room and watch The Big Bang Theory: Amy (Farrah Fowler) and Sheldon were about to buy a turtle together. Just as the caption I'd just finished typing says, I have more in common with Amy than I care to admit.

Coincidence? Hmmmmmmmm

A little feller I rescued from the middle of the road
shortly before his release (and me)

Episode 58: More Sleuthing: Brain Tumor? If So, That Could be Lucky! OR Parkinson's (Not Lucky)

Okay, so I'm not necessarily thinking that I have a brain tumor.

However, in fact, in January 2012 I was found to have a mass in my sphenoid sinus. The sphenoid sinus lies right next to the brain stem, right where the hypothalamus lies and directs autonomic functions by sending hormones to the pituitary gland.

The sphenoid sinus is the deepest one,
located next to the brain stem where
autonomic functions are governed.

And, as you know, sports fans, I identified dysfunction in my autonomic system long ago in my quest for answers to my health problems. For instance, the hypothalamus controls such autonomic functions as sleep and wakefulness--identified in my case as idiopathic hypersomnolence (in other words, I sleep way, way too much and am powerless to change that), breathing (an ongoing problem), appetite (another problem for me these days), heart rate (a possible problem for me, as identified on a stress test and ECGs), temperature control (I'm about 20 degrees warmer than everyone else, and not from hot flashes), and more.

Symptoms of brain tumor/cancer listed at the Canadian Virtual Hospice include:

• increased sleepiness - I obviously have that;
• decreased ability to move around - very clumsy these days, including a fall I'll discuss in this episode;
• trouble speaking or understanding conversation - I've already posted on my losing some fluency while talking and very frequently using weird substitutions for words (substitution aphasia);
• loss of memory and especially the ability to form new memories - I can still form new memories, but I'm not nearly as sharp about things as I used to be and have noticed some real holes in my memory for recent events;
• weakness, which may affect only one side of the body - I definitely have overall body weakness, and today I had a weird weak feeling on the right side of my face;
• seizures - None of these, thank goodness;
• extreme mood changes - I don't think this is going on, but I do know I've had some despondent moods lately far beyond what I normally feel.

Of course, I have already received a diagnosis of neurodegenerative disease, so perhaps all this stuff relates back to that--but I'm thinking that if it turns out, instead, that the culprit is this sphenoid sinus mass, I might actually be CURED! Or at least symptoms could be slowed down. And since symptoms lately seem to be speeding up, that would be an absolute dream.

I recently posted about increasing headaches that are intractable to all meds I've tried, including the Tramadol prescribed to me because I'm not supposed to take NSAIDS due to my (mild) kidney disease. But in desperation I did take NSAIDS when the Tramadol didn't work, and yet nothing really helped.  I just suffered with it for days and nights, five or six or so.

Of course, masses in the sphenoid sinus can cause headaches. In fact, I spent a little time researching those masses once again. I'd already read that all sphenoid sinus masses should be investigated. In my case, that wasn't done when it was found early in 2012, nor has anything been done since. My Ear, Nose, and Throat (ENT) specialist told me it was just a polyp and not a problem.

And who am I to argue that I'd seen literature saying it should be investigated anyway? You have to pick your battles, as I've learned--and what I've actually learned, basically, is don't even bother to battle because your research and theories will be utterly ignored, if not ridiculed (as happened to me by a neurologist at Johns Hopkins).

But now that I have these new symptoms, I'm going to take that earlier report of the sphenoid mass to the eminent Dr. A., my neurologist, when I see him in April. I already reported in The Mary Dell Show recently how disappointed I was when I called his office about the headaches and his message came back to me as "If the headaches are bad, go to the emergency department," a non-answer if I ever heard one.

I've learned the ED is not the place for someone with my type of health problems. I mean, obviously, if I break an ankle or I am positively in a heart attack, I'll go. But for something as nebulous as headaches, very little will be done. Maybe an MRI, but one of that particular sinus? Doubtful. That's why we patients should be able to go to our doctors, NOT the emergency department, with these kinds of complaints, but it seems the buck is being passed by nearly all doctors nowadays, who are sending patients to the ED rather than scheduling an appointment in the office.

And the ED is known to be the most expensive place health care is dispensed, and all kinds of programs exist to keep patients from going to the ED for routine care, so why is it that doctors are bailing on us and sending us to other doctors well versed in emergency medicine but not necessarily in our individual problems, including neurological ones?

Ah, well.  I've already complained enough about that.

Sphenoid sinus headaches from inflammation are said to cause pain at the base of the skull and neck and on the top of the head, and those two places, along with pain behind my eyes which would probably be the frontal sinuses--though some sites say the sphenoid sinus also causes pain there--are exactly what plagued me during these recent headaches. The sphenoid sinus is located right between the eyes, but relatively deep in the head.

Of course, my problems in the sphenoid sinus and my other sinuses might, in fact, be simply related to my diagnosis of granulomatosis with polyangiitis (Wegener's granulomatosis), which I was told at this point is limited to my nose and sinuses but which is known to cause problems in other organs, including the brain.

In other words, the possibilities are pretty much myriad, but no one--not a single one of my specialists--seems very curious to find out what is actually going on.

Anyway, in addition to these very sick headaches of late, I have a couple of new clues that could mean the mass in my sphenoid sinus has swollen.  The mass doesn't have to be malignant to cause major problems; just by this deep sinus's becoming inflamed, according to the literature, pressure can be put on the brain and cause serious symptoms, leading to severe illness or death.

So, here are the new, and in one case not-so-new, clues:

Dysguesia:  This is a disorder of taste and involves sudden changes in a person's sense of taste. Most frequently, foods we loved suddenly become unappetizing.  This has been happening to me quite a bit of late.  In fact, most foods are turning me off these days.

I first noticed this problem about six months ago when I suddenly couldn't stand the taste of Pepsi. As a lifelong Pepsiholic, this was a major--and sudden--change. For most of my adult live, I've regularly drunk so many Pepsis a day I'm embarrassed. Then one day--Yuck! Pepsi! Couldn't stand it!

I then began drinking ginger ale like a fiend. I couldn't get enough of the stuff, and in the past I've never liked it very much. I started going through close to a liter a day, grateful that even if I was taking in a ton of sugar I wasn't taking in caffeine. This went on for months, fueled by how cheap a generic liter of ginger ale is compared to Pepsi or Coke--we'd regularly find them for 72 cents apiece!

Then, about a week ago, after the headaches started, I could barely tolerate the taste of ginger ale anymore. Boom. Just like that, yuck on ginger ale.

Very weird. Other foods have gone the way of yuck as well, pretty much all of a sudden.

Even smells can be affected. Yesterday afternoon, in the midst of hypersomnia, I could smell ground beef cooking on the stove--Honey was making tacos. I've always liked the smell of ground beef cooking, but this time it smelled atrocious. I did eat the tacos later, but today he made roast beef and mashed potatoes, and for the first time in memory I didn't even like the taste of mashed potatoes, one of my favorite foods.

I sure hope this thing goes away!

Out-of-Control Sneezing and Productive Cough.  I've written about my "productive" cough over the past few months--this means that the cough brings up phlegm. I also have been sneezing like a maniac lately. Both of these are symptoms of sphenoid sinusitis, or any sinusitis, that causes infection in the brain, according to Sinus Reference.com. Obviously, a brain infection can be serious.

REM Sleep Behavior Disorder. I've commented extensively on this recently. I'll link to those posts momentarily. This problem, too, came on very suddenly and swiftly just when the headaches were at their worst. (I'm having some relief lately, but the threat of those sick headaches is always there, lurking just below the surface.)

REM Sleep Behavior Disorder is frequently a precursor (or concurrent with) Parkinson's Disease, so I have also spent some time researching that disorder.  (N.B. I still think I may have myotonic dystrophy but have not yet gotten the DNA results--but I guess it's possible to have more than one of these things at a time.)

Something happened a year ago this past Christmas that also could suggest Parkinson's, according to "Talking While Walking Puts Parkinson's Patients at Risk for Falls," published by Florida State University.

Lack of Balance/Falling.  Just before Christmas 2013, my son J. and I were walking along the sidewalks in Frederick, Maryland, while Christmas shopping, having a happy conversation about the day's activities. Suddenly, out of nowhere, my legs just didn't seem to work anymore. I recognized it as it happened--I just couldn't coordinate them; I felt a massive moment of confusion, and then I pitched forward with the momentum of walking and landed flat on my nose on the sidewalk.

I can still remember seeing that sidewalk rushing up to me, and my arms giving out rather than protecting my face from the fall.  (The arms thing, of course, makes me think of muscle weakness, a symptom I also have but which the "wonderful" (NOT) neurologist at Hopkins also told me I wasn't experiencing, even though she didn't really question me about any such symptoms.)

I must have blacked out momentarily because I was later diagnosed with a concussion.I just remember lying on the sidewalk in a massive pool of blood, my nose and face really hurting, and slightly freaking out. J. was right beside me, remaining amazingly calm--I really appreciated that in the kid, who has had his own set of problems his whole live and could have also freaked out badly. But he didn't.

A wonderful meter maid (I'm sure there's a more politically correct title for the job) saw it happen and rushed over to me. Also, two men from the Weinberg Center for the Arts, a wonderful venue, who were just about to close up for the day witnessed the fall and rushed out to me with paper towels and a wheelchair. I left a ginormous blood stain on the sidewalk right in front of the Weinberg. It's probably still there.

The meter maid thought she saw me trip, and while there may have been a slight tripping over something, I don't recall that at all, and my inability to right myself once the confusion set in was far out of proportion to any minor tripping I might have had, if any.

I guess the blood pooled in my face because I ended up with a black eye, as well as a swollen (but thankfully not broken) nose. Although the incident was very scary, I was touched by the human kindness it brought out in those who witnessed it. Once the ambulance came, I was briefly checked out and asked whether I wanted to go to the ED. The bleeding had stopped, and going to a hospital was the last thing I wanted to do. I just wanted to get home (a two-hour drive, ugh) and rest. I did that until I threw up later and went to an ED near home and was diagnosed with the concussion.

Me, after the fall.

The point is, it all happened when I was walking and talking at the same time, something I rarely do as I'm not much of a shopper or walker (unfortunately) anymore--too exhausting.

"Parkinson's disease and multiple sclerosis are two common diseases that can affect the brain resulting in loss of balance," says the Neurology Muscular Dystrophy and Neuropathy Institute. And I have indications of both of those diseases; REM Sleep Behavior Disorder is highly associated with Parkinson's Disease. White matter lesions, which I have in abundance according to Dr. A., often occur in conjunction with Parkinson's Disease but are not necessarily due to it. However, of those white matter lesions, Dr. A told me he'd diagnose me with multiple sclerosis based on my symptoms and those lesions, except I didn't have any lesions in my spinal column, which almost always happens in MS. I was also slightly older than the normal range for diagnosis MS.

Thus, I can't help but worry that this incident of loss of coordination and falling was due to whatever is still happening in my brain and is now bringing on the headaches and REM sleep behavior disorder as well.  The problem is, according to the Florida State University article, one of "cognitive loading." Talking while walking is actually a very complicated thing to do, and those whose brains are impaired have trouble managing both simultaneously.

Oh, well, this is all much ado about nothing, I know, until a doctor decrees one or the other (or something else) to be the culprit. But my faith in the medical system is on such low ebb these days that I can't help but doubt I'll be taken seriously or given the right tests.

Now that I have the "neurodegenerative" diagnosis--even though the exact cause hasn't been identified--I worry that all these symptoms will just be considered par for the course, and a more acute cause--such as a sphenoid sinus tumor or inflammation, or even an ectopic pituitary tumor in the sphenoid sinus--will not even be investigated.

Such is the frustration of a patient here where I am, Down the Rabbit Hole of today's health care system.

I'm still trying hard not to get too discouraged and give up entirely, and I do think my health sleuthing is under control--NOT an obsession, just a normal curiosity for someone who has the tools to actually research the medical literature, as well as a burning desire just to KNOW.

I actually made an apple pie tonight, and now I'm going to practice making some tea sandwiches. A friend asked me to cater a service for her husband who died recently. So, you see, I'm not just sitting here obsessing about brain tumors and Parkinson's.

I just wish I could get a doctor to take all of this seriously and actually investigate the causes of all these problems.

But, as my ex-husband used to say all the time, "People in hell want ice water."

And they're not likely to get what they need, either.

It's elementary, dear Watson.